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. 2021 Oct 30;9(11):1472.
doi: 10.3390/healthcare9111472.

Is the Pain Just Physical? The Role of Psychological Distress, Quality of Life, and Autistic Traits in Ehlers-Danlos Syndrome, an Internet-Based Survey in Italy

Matteo Rocchetti  1 , Alessandra Bassotti  2 , Jacopo Corradi  1 , Stefano Damiani  1 , Gianluigi Pasta  3 , Salvatore Annunziata  3 , Viviana Guerrieri  3 , Mario Mosconi  3 , Davide Gentilini  1 , Natascia Brondino  1
Affiliations

Is the Pain Just Physical? The Role of Psychological Distress, Quality of Life, and Autistic Traits in Ehlers-Danlos Syndrome, an Internet-Based Survey in Italy

Matteo Rocchetti et al. Healthcare (Basel). .

Abstract

Background: Ehlers-Danlos syndromes (EDS) have been associated with psychological distress, comorbid psychiatric disorders, and worsening in quality of life (QoL). Among the neurodevelopmental disorders, autism spectrum disorders (ASD) have shown the highest rates of co-occurrence with EDS. The reasons for these associations are unknown and a possible role of pain in increasing the risk of psychiatric disorders in EDS has been suggested. However, a detailed picture of an Italian EDS sample is still lacking.

Methods: We conducted a web-based survey in a third level center for the diagnosis of EDS in northern Italy, to investigate psychological distress, QoL, and the presence of autistic traits. Furthermore, we correlated the psychometric data with some clinical variables.

Results: We observed a high rate of psychological distress with 91% of the responders at high risk of common mental disorders, low QoL, and high prevalence of autistic traits in EDS patients. Specifically, patients lacking a specific genetic test, diagnosed as suspects of EDS appeared to be at greater risk and reported worse psychological QoL. Pain was significantly associated with both psychological distress and worse QoL.

Conclusions: Our findings support the need of further research and of a multi-disciplinary approach to EDS including psychological and psychiatric liaison.

Keywords: Ehler–Danlos; anxiety; autism; depression; pain; quality of life.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Global health questionnaire differences between EDS subtypes.
Figure 2
Figure 2
Bonferroni-corrected differences in WHOQOL-BREF domain scores among EDS subtypes.
See this image and copyright information in PMC

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